Wednesday, December 19, 2012


Alexis and Sparky the dog at a visit with Santa!
A year ago, right around this time Alexis started flaring. At the time I figured it was a normal flare that would be controlled with a round of steroids. Obviously, I was wrong.

Our lives felt as if they were spiraling out of control over the next few months. I became obsessive over Alexis' lab results as we found ourselves in and out of the hospital receiving blood transfusions, Remicade infusions -- and @ 10 mgs/kilo (which is the absolute max dose they will give someone) every FOUR weeks (but they prefer you to space them out to 8 week intervals). Nothing was working. "Colectomy" was being thrown around FAR too often..

...and.. you get the idea..things were just not. good.

I never thought we would come near the end of the tunnel...I felt like we were forever trapped in a dark hole. I felt as if Alexis would never get better....and  I never looked at the surgery as our saving grace, but more as a last resort that we were forced into.

But, July came and went and  we made it through surgery #1. Shortly after Alexis became a poster girl for IBD all over the web! Cards came flowing into NCH, and we seen her on several front pages of major websites. The out pour of love was simply amazing. Not only did she receive well over 500+ cards from complete strangers, we were getting the word out on just how serious UC and Crohns was. I have talked to so many people who hide their disease from the world, as they are scared to talk about it. I think the more attention we bring to IBD, the better. .. Everyone seems to know someone who suffers from the chronic illness, yet so many people have no clue what it all entails. I would like to think Alexis helped break down the wall, and make discussing IBD a little less 'taboo'.

A week post op from surgery #1, Alexis' was better than ever. Her body seemed to thrive without her colon. She was happy and having an ostomy did not bother her at all. She was off of all medications and we could get out and FINALLY do things again as a family.

A few weeks after the surgery, we found out we were having another baby GIRL! My husband and I have dealt with several "unexplained losses" over the years, so we were absolutely thrilled to add yet another little beauty queen to our family.

In October, we made it through surgery #2. Healing time took a few days longer than we had anticipated.. but there were no problems and Alexis did great.

And now, here we are. Alexis is turning SIX in just 4 days, Christmas is less than a week away and the FINAL surgery is in 2 weeks.

.. My point is, the last year has been trying. Enough to throw ANY one into a deep dark depression. We all managed, and came out somewhat better in the end. We also have so much to be thankful for. Things have been slowly on the up and up, and I didn't see how it could get any better until after the final surgery..

but, I was so so wrong!

I received a call mid morning yesterday regarding a dream request that was submitted on behalf of Alexis to the Sunshine Foundation who deal directly with kids who have chronic illnesses. (I submitted hospital records and letters from Alexis' Doctor a couple months back, and then.. It completely slipped my mind.) I was absolutely shocked when she told me they had moved Alexis to the official waiting list and wanted to call and let me know. I was speechless. A rush of emotions came over me, and I of course started crying and thanking the woman. We had wanted so badly to take Alexis on vacation, but with everything that's gone on over the past year... financially we just could not do it. Alexis would ask us constantly when we were going to Disney World, and we would tell her in a couple years (not even knowing if that was possible).

She explained that our family would be sent on a five day/four night trip to Florida. This vacation also included: room and board in one of their many themed homes (or "cottages"), car rental, tickets to Disney, Universal, Sea World and Lego Land! They were even going to give us additional funding to cover the cost of food! Simply Amazing. We would never be able to afford something so extravagant on our own unless we saved up the next 5 years! Florida is so expensive, and this is truly a once in a lifetime opportunity that I am beyond grateful to be able to experience with my little fighter!! It will be another year or so before we make it down, but that gives us time to save (as I want to be able to do the overpriced, way cool things in the parks as well!) and it also gives Alexis plenty of time to heal after her next surgery. We will also be traveling with our newest family member, so the older she is... the better!

I will update again...but I am sure it will be in 2013! Surgery is January 4th, so expect an update around that time.

To all my readers: Hope you have a fabulous Christmas with your loved ones and a Happy New Year!

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